Child-rated and Parent-rated Quality of Life in Childhood Intermittent Exotropia: Findings from an Observational Cohort Study

Abstract

Purpose: To use the Pediatric Quality of Life Inventory (PedsQLTM) to describe generic quality of life (QOL) in children with intermittent exotropia [X(T)], to examine changes in scores, and to compare scores in children with X(T) to those of age-matched healthy cohorts. Methods: PedsQLTM was administered to children and parents as part of the UK Improving Outcomes in Intermittent Exotropia (IOXT) study. Excluding 27 children with co-morbidity, PedsQL data was available from 365 parents and 152 children. Paired-samples t-tests examined change in PedsQLTM scores over time. One-sample t-tests and mean differences compared scores between children with X(T) and healthy UK samples. Results: Mean parent-rated PedsQLTM scores from the X(T) cohort at baseline were: 90.6 (Physical Health), 78.2 (Emotional Functioning), 88.8 (Social Functioning), 83.4 (School/Nursery Functioning), 83.6 (Psychosocial Summary), 86.2 (Total).  Mean baseline child-rated scores were: 78.1 (Physical Health), 76.5 (Emotional Functioning), 73.6 (Social Functioning), 72.2 (School/Nursery Functioning), 74.2 (Psychosocial Summary), 75.5 (Total). X(T) parents rated their child’s QOL similar to healthy children’s parents, except for poorer School/Nursery Functioning in 2-4 year olds. X(T) children rated their QOL significantly better than age-matched healthy children. There were no significant changes over time. Conclusion: Using the PedsQLTM we were unable to detect significant effects of X(T) on generic QOL. However, evidence for PedsQL’s utility in this condition remains limited without further investigation in larger samples and concurrent control groups. Further qualitative work and consideration of condition-specific measures in UK cohorts are needed before practitioners can better inform parents about psychosocial impacts of X(T).